A huge "thank you" to all who have come back after my month-long absence from blogging. As I said in my last Blog, caring my husband who has Alzheimer's Disease had taken a turn for the worse. Yes, it is a full-time challenge for me as it is for all caregivers. I simply had no energy left to think, much less blog.
What I did manage to do was kick off a campaign to sell "I Am Fighting FTD" ballcaps and then shirts. I was doing this as a fundraiser for the AFTD during their "Food for Thought" fundraising campaign.
I am not trying to sell them here. I merely mention it because on the shirts that I designed, part of the message on the back is "We All Fight Together." At the time I designed the shirts, that phrase jumped out at me because together, we are a mighty force to fight against FTD. We all stand together to push for research, assistance for those with FTD and/or caring for someone with FTD and to educate the world that FTD even exists.
This mighty force I refer to has to involve all of us and we must all be committed to the same cause. Not all of us can climb up on a soapbox and speak out to anyone who will listen. Interestingly enough, I could not have done that before FTD, but now I can and I do. However, every one of us is part of the force in someway. Even when it is correcting people every time they assume that what we have is Alzheimer's Disease or make stupid remarks like "You look fine to me."
When I was first diagnosed with FTD, I was lucky to immediately find the AFTD and have relied on them ever since. I try to repay their efforts and assistance by doing what I can to raise money and spread the word about FTD. More so the second. I can comfortably say that I have educated a lot of people about FTD, whether they wanted to be or not! Because FTD quickly robs most of us of financial resources, it is difficult to monetarily support any organizations. That is why I use my remaining talents to support the AFTD since my finances are limited.
The AFTD is not the only organization out there supporting the fight against FTD, there are others. I apologize that I cannot remember all of them, but they are are fighting FTD in their own way. Some that come to mind is PSP.org, Dementia Society of America, Dementia Alliance International, FTDarn and even the Alzheimer's Association. To me, it would be ideal if all the organizations worked together, not to cross purposes. Hopefully, they already do and I just am not privy to that knowledge. I hope that they share information, resources and research findings when possible.
I believe I mentioned, a few months back, that I was serving on Pennsylvania's Task Force for Alzheimer's Disease and Related Dementias. (Yes, that's us, lumped into "related dementias".) I am doing my best to constantly remind the members of the task force that the related disorders are just as important. Trying to be heard is frustrating, believe me. I am also serving on a sub-committee and one of my assignments was to contact many of the different dementia organization to determine what they do and what types of support they offer. I was amazed at how many of the organizations held that information to the vest and were reluctant to share it with me. Of course, it is also possible that my FTD didn't allow me to ask the right questions.
Perhaps I am an idealist in my thinking that all the organizations should assist and rely on each other. My thought is that, ideally, we would have a national registry of all non-profit agencies. Then, when someone receives a diagnosis of any disease, they could make one contact and learn what resources are out there and how to get in touch with them. For instance, I did not know that the Alzheimers Association supports those with FTD and other dementias. Unfortunately, seeing how this national registry would most likely be done by a government agency, I probably am indeed an idealist.
There is more to the "We All Fight Together" expression I put on the shirts. It is for everyone of us. If we are members of or supporters of one organization, that does not mean that all of our support has to be limited to one organization. Each organization has its own principles and purpose. Yes, it is up to us to research and learn about each organization ourselves before we chose whom to be assiciated with, but it doesn't have to be just one.
I would be negligent to not mention that it might be better to focus on a small number. If we spread ourselves and our support too thin, we become less effective due to our limited resources of time and energy. At least that is very true for me.
Fighting together applies to support groups as well, at least in my mind. Some groups are limited to those with the diagnosis, some to family members, some to caregivers and probably many more. It my experience, it is the open groups that sometimes get people taking sides. It's worse for patients... no worse for caregivers.... no worse for...
We all have to fight this disease together, not push against each other. We can all learn if we listen and don't immediately dismiss opposing opinions. If you read my blog regularly, you probably know that I suffer from the paranoia that FTD often brings us, so take that into consideration when reading my next statement. Quite often, when I am on the joint support groups, I feel my opinion is totally dismissed because I am not a caregiver so I cannot understand. Of course I am a caregiver, but I would like to think I would understand the caregiver's problems even if I were not.
There is so much benefit by listening to all sides of a situation. These open support groups are not the perfect place to be writing about how horrible those with FTD can be. We already know we can be. We also do not need to hear how much we are resented and, in some cases, hated. It's not the place for those of us with the disease to be criticizing all caregivers. Those comments need to be in a more private forum so that we can, indeed, fight together, not against each other.
After reading back over what I have written so far, I do realize it is coming across as a lecture. That is certainly not my objective. During the past month, I have observed many upsetting situation, not just online, but in the hospital, in the nursing home and even with the Home Nursing Agency who is providing some help for my husband adapt to home life once again. I hope my husband was not aware of these careless and thoughtless comments and actions, but my sister and I certainly did. They brought all these issues to mind.
When I added the "We All Fight Together" to the shirts, I was not aware of why it jumped out at me. As life progressed through the past month, it became obvious that there was indeed a reason.
Thank you for bearing with me... and I promise not to lecture next week. It's good to be back...
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